Пікірлер

• 
  @shazamichelle20433 күн бұрын

  This happened to me when I was 11. I was so scared. My head/neck would lock, sometimes backwards, sometimes to the side or drop forward. I remember it clearly. I was rushed into hospital where they told my mum it was hysteria. Nothing unusual was happening at that time, it just came on suddenly. Now 58, it's still on my medical records as hysteria.

• 
  @ilyas262511 күн бұрын

  I think i have this the symptomps started 3 months ago im seeing a neurologist tommorow. How can this be treated?

• 
  @dystonia_uk10 күн бұрын

  Dear @ilyas2625 Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @dianegowland586612 күн бұрын

  I have cervical dystonia for 30yrs and now when stressed or bright lightes my eyes clamp shut ❤

• 
  @frillyjilly10014 күн бұрын

  Thank you Ross. I have dystonia too. One of the hardest things would be being videoed while talking about your cervical dystonia. So I think you are doing a fine job of teaching others about this neck problem. Keep up the good work. A*

• 
  @markcrisp0729 күн бұрын

  Even today many GP#s and physios are ignorant about it. They could spend 1 hour reading about it and have some knowledge. But in a system that rewards poor performance why bother?

• 
  @DunkengeorgeАй бұрын

  I have the exact same thing as this man. It’s an absolutely horrible and insidious condition. This man is an inspiration.

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  @nengnongdhalia53522 ай бұрын

  sangat membutuhkan solusi terbaik untuk sembuh..selain doa dan berusahamencari cara terbaik untuk sembuh..karena kadang sangat menggangu kerja utk mrlanjutkan hidup

• 
  @SBGames82 ай бұрын

  I have some right head turning that happens by itself and it is very frustrating. My doctor says it's anxiety, stress, and TMJ. He said he was 99% sure and not to google anything or do research. He said seeing a neurologist is a waste of time.

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  @dystonia_uk2 ай бұрын

  Dear @SBGames8 Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @jonathanmyles873 ай бұрын

  Thankyou

• 
  @mktech20423 ай бұрын

  Plz try biotin tablet my Father suffering from dystonia seens 20 years and my fathers friend suggested biotin tablets.He was completely fine in one day. plzz plzz try it

• 
  @alshleygreenwood49435 ай бұрын

  Hi there I have o problems I am going few the hospitals ATM wen my eyes see sun light or day light my head go's bk looks up and my eyes roll bk in to my head I am under neurology doctors and I can see wen this happens

• 
  @dystonia_uk5 ай бұрын

  Dear @alshleygreenwood4943 Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @kimberlyforrest36767 ай бұрын

  I have just been diagnosed with dystonia. I am scheduled to meet my move disorder neurologist in January. Have you had Botox injections? If so, do they help?

• 
  @dystonia_uk7 ай бұрын

  Dear @kimberlyforrest3676 Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @venkatsai87344 ай бұрын

  Are you cured now I diagnosed this year January

• 
  @dystonia_uk4 ай бұрын

  @@venkatsai8734 Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @dougjoy10153 ай бұрын

  Barely do they help

• 
  @janeredfern5623Ай бұрын

  I have cervical dystonia and a tremor- Botox has greatly helped me

• 
  @dr.escargon8 ай бұрын

  So brave.

• 
  @mabaker3918 ай бұрын

  I believe it could be caused by heavy metal toxins..... Detox from the heavy metals and most or all the symptoms will disappear.....

• 
  @brody62939 ай бұрын

  *promosm*

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  @Nagra0079 ай бұрын

  My daughter is healthy, but when she is 5 years old, she fevers and brains swelling .now sh3 is totally disabled. It's ok, but after 1 month, she disabled the start of the distonya .every body part finger ,hand,arm shoulder, feet ,legs, spine, neck,face, teeth, menas every single body part .no any medicine help 12 different kind medicine distonya. But not help any .after distonya last year, start operation, spine, hip,legs. I m really happy now u distonya free.

• 
  @GregHunt5510 ай бұрын

  Only just watched this. 3 months late! Super interesting and I thank the participants for their time and wish them every success in their projects. Such a low number of views considering the number of people with CD

• 
  @Tns8510 ай бұрын

  Dystonia is involuntary shaking of the head not just stiffness

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  @markcrisp0729 күн бұрын

  ok so where was this guys shaking? You are wrong. It can be both or either

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  @agnieszkajaglinska661310 ай бұрын

  Thank you for sharing. Best of luck

• 
  @thomasbennett175911 ай бұрын

  Thank you for sharing your thoughts and unfortunate discovery of eye dystonia. I have a very similar paradoxal symptoms including, when I am talking to someone (and not by myself), my eyes open wide. But when I'm listening, my eyes slowly close shut. I do have short term control (moments) when i sense danger, i can open them. But then seconds later, they may try to close or squint (causing blurry vision). My neurologist calls it Meige syndrome, But that is just a general term, and I do NOT have any other symptoms such as tremors or spasms. The eyes just slowly close to a squint (barely open). Botox has little to no affect, so I'm contemplating surgery that will help lift the lids. I just don't want them to remove anything, such as an eye muscle. Finding a qualified and sympathetic surgeon is extremely hard. I hope to find some answers in the Dystonia Society. This has definitely been a life-changing event and after two years, adjusting is exhausting and frustrating. Thanks again for sharing.

• 
  @somersbee04 Жыл бұрын

  I was not diagnosed with Cervical Dystonia until my mid thirties. It took many doctors, M.r.i'.s, misdiagnosis, etc. I was hit by a S.U.V in 2004 while walking and my spine was injured (4 broken bones) there was also trauma to my muscles on right side where it was completely crushed. I have many other spine problems but thats for another day. With Dystonia, it is not known if it is genetic or caused by trauma. I currently see a Neurologist for treatment and get botulinum toxin injections every 3-4 months in my shoulders, head/neck and forehead for the migraines. It has helped some. Which is better than nothing. I am also on other medications of course to help with the constant muscle spasms. But I recommend the treatment if you have not had it. Hope this helps others that reads this. I wish you all the best that are out there suffering like I am.

• 
  @kunal40763 ай бұрын

  I can understand your problems as I too got cervical dystonia due to injury which I am sure nobody will believe my story of the incident. I too have many health problems. I am sorry you are going through all this. I hope you find peace and happiness.

• 
  @prageruwu7148 Жыл бұрын

  I have this it does not hurt but is anoyying

• 
  @amandaslate7264 Жыл бұрын

  I have cervical dystonia, came on from a really bad fall 5 years ago. STOP living in this, retrain your brain, the more you stay and think you have a issue the more it becomes a problem. RETRAIN your head! Listen to a Ted Talk done on this!!

• 
  @valak_edits9915 Жыл бұрын

  I have this its honestly torture its just horrible you have trouble sleeping drinking just enjoying yourself

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  @mutesanoel6864 Жыл бұрын

  is it painful?

• 
  @docpoh Жыл бұрын

  kzread.info/dash/bejne/eIabubGDk8nPZbQ.html Look at these wonderful treatment results! Awesome!

• 
  @theintuber6612 Жыл бұрын

  Hi actually i also tend to move my neck sideways sometimes to adjust but i can however control it but it's like when i m doing nothing or just thinking or i am eating it automatically starts happening and then i control it

• 
  @Nightwolf3536 Жыл бұрын

  Mine is like the same way, mine goes sideways and I can't control it. Happens when I'm in crowds alot like store or markets or theatres anyway. But when I'm alone it goes away.

• 
  @FullTimePatient37 Жыл бұрын

  This is AWESOME 😎 👍🏼 THANKS 🙏🏼

• 
  @FullTimePatient37 Жыл бұрын

  With occupational neurologia it's HELL ...

• 
  @lisazobel69 Жыл бұрын

  Mine is from a boyfriend putting me in a headlock. I’m still checking injections every three months to stop the spasms. God bless you brother.

• 
  @antonio-xj8mc Жыл бұрын

  Are the injections painful ?

• 
  @cloverbird578511 ай бұрын

  Exactly this happened to me also....

• 
  @chrisbowman4267 Жыл бұрын

  Can Baclofen cause this?

• 
  @dystonia_uk Жыл бұрын

  Dear Chris Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @chrisbowman4267 Жыл бұрын

  @@dystonia_uk Thankyou :)

• 
  @timknight7367 Жыл бұрын

  Thank you

• 
  @sotirzvanidjubre4109 Жыл бұрын

  It is pcychologist l

• 
  @lvhendking Жыл бұрын

  Are there things I can do to help reduce the spams when they happen

• 
  @dystonia_uk Жыл бұрын

  Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @jadenliles69812 жыл бұрын

  What a great guy it’s one of the hardest things in the world I got diagnosed with dystonia when I was 16 but i started getting it when I was 12 years old. It was so hard to get diagnosed I had no idea what was happening to me I couldn’t explain it very well and just felt so alone 😔 I’m currently taking epilepsy drugs to calm it down as apparently there’s nothing I can really take for it but it helps take the edge of and reduces them from happening but I have phases when it can be really bad and I’ve been getting it really bad at the moment and I’m so fed up and feel so alone with it but people like this guy really make me realise that I’m not alone and there are people going through the same thing as me. I have so much respect and love for those battling this condition it ain’t easy and I don’t know who needs to hear this but you are not alone you are strong and brave you have got this you beautiful incredible people! 💯👏💙

• 
  @dystonia_uk2 жыл бұрын

  Dear Jaden, Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @hirefoo2605 Жыл бұрын

  I was just diagnosed this year. I’m so confused by this. Is it true that 5 years it will get better? I know it doesn’t go away. But I’m being told this along with Botox? I pray for everyone here. I hope they find a cure.

• 
  @nadezhdanadya8395 ай бұрын

  ​@@hirefoo2605это будет намного легче через 5 лет

• 
  @jamesplymire53422 жыл бұрын

  I was diagnosed with Cervical Dystonia at age 27 in 2007. It wasn't too bad at first, but after 15 years it has gotten worse. I can't even sleep lying down because the neck/head movement keeps me from falling asleep. For the first 10 years or so I used alcohol to deal with the pain and spasms and damaged my liver. Now that I cannot consume alcohol nothing seems to help. I tried Botox injections for the first couple of years, but that didn't help much, if at all. I'm to the point now that I don't where to turn. I cannot drive a car or work because of this condition.

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  @dystonia_uk2 жыл бұрын

  Dear James, Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @CarolKennedy2 жыл бұрын

  I was diagnosed with cervical dystonia 05/25. It’s horrible. I have severe headaches for days and days. I have it in my feet as well. It’s a nightmare. Sending lots of hugs from the States!!! ♥️

• 
  @omhafhhhochannel88202 жыл бұрын

  I feel for you..thanks for sharing awareness...my 26 y.o. son had started having involuntary head movement after having intense stress at work and depression...I'm not sure if it's dystonia or not...Which specialist can I go to ? Thanks

• 
  @dystonia_uk2 жыл бұрын

  Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @Riqqie20002 жыл бұрын

  Can you guys get in contact with me to help me treat my issue? I'm 21 years old, I did my first surgery in neck when I was 8, and another when I was 11. and now I'm 21 but still the muscle is really tight and my body preformed a bit leaning to right side. Is there any hope to get treatment even though I did 2 surgeries... but now since I'm grown... is there any hope to untight the muscle somehow??? Pls reply

• 
  @dystonia_uk2 жыл бұрын

  Dear Riqqie, Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @richardbernard58982 жыл бұрын

  I've had CD since 1995 and realise after seeing your video, that somewhere along the lines I've allowed myself to become complacent about this "Dis-Ease" and had come to believe that this constant daily discomfort and anxiety i feel is something that's always going to be.a part of who i am and i just have to buck up and deal with it. Hell no ! Time to be proactive again acc act and think positively and start.living by putting an end to defining myself as this label. Thank you. I hope after the seven years since you've posted this video things have gotten better for you. I'm very excited to find out.

• 
  @s.p15122 жыл бұрын

  I have cervical dystonia

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  @sakuraharuki143 жыл бұрын

  When I'm writing or drawing, my eye pupil will randomly and uncontrollably twitch around and my vision will go blurry, also my voice box tightens so it makes it hard for me to talk loud (and makes me only be able whisper) is this dystonia???

• 
  @dystonia_uk3 жыл бұрын

  Dear Ainsley, Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @Shekina-02 жыл бұрын

  My eyes also does that except for the voice thing. Antipsycotics caused this in my case

• 
  @puddincakes1005 Жыл бұрын

  Have you looked into Meige Syndrome?

• 
  @sakuraharuki14 Жыл бұрын

  Thank you for the suggestion! I have already checked into this and I have not been diagnosed with it! Thank you very much!

• 
  @puddincakes1005 Жыл бұрын

  @@sakuraharuki14 Glad to hear you didn’t get diagnosed with it, but sorry if you are still searching for an answer. I also have vocal cord dysfunction which can make my voice sound weird sometimes if that leads you anywhere…

• 
  @HaleyMary3 жыл бұрын

  I think I have eye dystonia. I've had stabbing eye pains that started in December 2013 when I was only 28. I woke up in the morning with this stabbing eye pain. It felt like my eye was being stabbed from the inside out with a knife or needle. Sometimes the eyes felt gritty like there was sand in them. It was so bad I screamed and thought my eye was exploding in my head. It hurt to open my eyes and tears were pouring out. I've been to so many doctors and specialists and have just been given ointments and drops, but sometimes they don't work. I sometimes need a cane to walk around my house so I don't walk into stuff. I also wear sunglasses every time I leave the house, even on rainy days and in winter. I don't have symptoms every day, but on mornings I do wake up with the pain it really limits what I can do.

• 
  @puddincakes1005 Жыл бұрын

  Have you looked into Trigeminal Neuralgia?

• 
  @HaleyMary Жыл бұрын

  @@puddincakes1005 Probably wouldn't do anything. I saw my optometrist a year ago and the scans of the back of the eye showed I had basement membrane dystrophy. So, now I have a definitive diagnosis and take drops for it. The drops don't help much with the pain though so I need to take advil for that.

• 
  @puddincakes1005 Жыл бұрын

  @@HaleyMary Dang I’m sorry! I have trigeminal neuralgia, and sometimes my eye gets stabbing pains, so that’s why I suggested it.

• 
  @HaleyMary Жыл бұрын

  @@puddincakes1005 That's alright. I forgot I had posted this comment a year ago. I wish the drops would prevent the pain, but they don't. I'm sorry to hear you have stabbing pains. Hope you are able to get something to take for them.

• 
  @puddincakes1005 Жыл бұрын

  @@HaleyMary Thank you, sorry you are still having pain as well :/

• 
  @paulakaiser71383 жыл бұрын

  The Doctors also said it was in my head. Your story is so inspirational and true to what I am still contending with every day. 3 years of botox shots and no improvement. Still looking for a remedy. Another symptom I am dealing with is balance. It is so difficult to keep focus when you're trying to correct your head in the direction you're heading towards. So depressing and frustrating. Oh, it also is crappy when your friends and family think you're making it up.

• 
  @KatySandovsl Жыл бұрын

  Omg thanks for sharing the Botox injection😢that what my doctor want me to do; I totally believe ejercicio and good heathy eating it will improve better than that injection.

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  @markcrisp0729 күн бұрын

  i think they say this when their B*S* does not work. Rather than do some research they would rather pass the blame onto the patient.

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  @MEDMONK133 жыл бұрын

  Thanks for sharing your story ❤️ . And excellent detailing by the pt.all the best for the channel

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  @junaidakhter86993 жыл бұрын

  What will be the treatment of writers cramp in near future

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  @dystonia_uk3 жыл бұрын

  Dear Junaid, Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @gypsyloo3 жыл бұрын

  I was diagnosed with dystonia this year. It's been incredibly difficult and frustrating. I'm a professional dancer so to not have complete control over my body is absolutely devastating. Mentally its been extremely difficult, and I'm still in the phase where I try to hide my symptoms. It's exhausting. I go for my third round of botox shots this week. It doesn't really seem to be helping though. I'm just wondering if there's anyone out here with this disorder who has tried to find the root cause, and treat it that way. I would really like to get to the bottom of this instead of masking it.

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  @booksoffthebeatenpath2 жыл бұрын

  Have you researched Joaquin Fatima’s?

• 
  @JelaGellan5 ай бұрын

  Ich habe das auch Einziger Lösung ist YJ Care Clinic 🎉

• 
  @bijoyrai26103 жыл бұрын

  After how many year destonia will be stable?

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  @dystonia_uk3 жыл бұрын

  Dear Bijoy Rai, Thank you for your comment. We do not provide information or support through our KZread channel, however, if you would like any further information or support, please reach out to us directly by email at [email protected] or by phone on 020 7793 3651. You can also find more detail on our website www.dystonia.org.uk. Thank you, Team Dystonia UK

• 
  @kitten53293 жыл бұрын

  I have this and no one talks about it!!!!!!! I have to get surgery for it

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  @netbizcarolina2 жыл бұрын

  Please tread lightly when considering surgery. Consult multiple doctors and ask to be referred to patients who have had surgery successfully. Promises are cheap but you will be the one living with the outcome!

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  @markcrisp0729 күн бұрын

  only two options are: Nerve cutting DBS

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  @user-js8nf5zo4d3 жыл бұрын

  Ben 15 yil bu hastalığı cektim. Tanısı bile zor kondu. Proloterapi botoks hacamat egzersiz kök hücre prp bitkisel tıbbi psikolojik vs vs vs Her aklima gelen tedaviyi denedim. 20lik dişlerimi çektirdim bitti. Dişlerinizi cektirin. Bu konuda bilgi sahibi cok doktor yok. Dişle alakasi yok diyen doktorlardan dolayi yillarca üstünde durmadım diş konusunun. Baska hicbirset yapmadim dişle bitti. Tum 20likleri cektirdim. Tamamen gomulu olani da çıkmış olani da cektirdim. Bu dunyqda cehennemi yasamak biliyorum bu hastaligi. O yuzden yaziyorum. Allah cekenlere şifa versin...